Tessa hasn't let MS deter her from acheiving amazing things, having authored several books and forge her path within the local community through her writing. Here, she shares her story from diagnosis to present day.
I wanted to tell my story to show others who may be just at the start of their multiple sclerosis (MS) journey that there are ways, even without disease modifying drugs (DMDs), to manage your symptoms, achieve your goals and lead a full and enjoyable life.
I’m seventy now and have lived with MS for almost 35 years. I was diagnosed with progressive MS shortly after the birth of my first child, at a time when there weren't any MS drugs available. As a new mother, I was determined that my daughter was not going to grow up to be a young carer, and that meant researching ways to help myself. I decided to see if there was any evidence that changing my diet might help, and I soon discovered there had been quite a few trials involving MS and food. I then consulted a doctor who also believed nutritional medicine could help MS, and I started to feel better.
In fact, I felt so much better that my husband accepted a temporary teaching post in Australia, and we moved to Tasmania for a year, where I had another child. It was whilst we were in Australia that I heard of a radical new theory about treating MS, which involved intensive exercise – specifically, weight training. Back in Britain, I added regular weight-training to my low fat, gluten-free and dairy-free diet, and my symptoms stabilised. Although I had some residual disability, I no longer worried that my symptoms might suddenly get worse.
I remained stable for thirteen years, during which I started writing regularly, and began an Open University degree. My book about nutritional therapy for MS, The Multiple Sclerosis Diet Book, was published in 2007, and I’ve since published three children’s detective novels, The Eye Spy Series. I’m now working on a Young Adult (YA) novel.
I’m not the only person with MS who has found that it has brought pluses as well as minuses into my life. Being unable to carry on working full-time gave me the opportunity to try writing, which had always been an ambition of mine. Being a stay-at-home mum with MS was sometimes isolating and lonely, but writing has helped me to get involved with the local community and make new friends. And although my MS symptoms have progressed a bit during the last ten years (mostly sight and bladder problems), I’m still able to walk around the house, and only use a wheelchair outdoors.
I was extremely lucky in finding the right advice just when I needed it, but I think it also helps that I’m a glass-half-full person. I’ve always seen MS as a challenge to be overcome, and not an insurmountable obstacle. I just wish that medical training included more about the benefits of a healthy diet and the right sort of exercise, so that medical professionals could start handing out advice on these at the same time that they hand out DMDs. Knowing that you are doing something to help yourself is hugely empowering.
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For MS Awareness Week this year, we wanted to hear from people who live with the long-term health condition. This is Sally-Ann's story.
Nine years ago, I was diagnosed with multiple sclerosis (MS). A year before, I had woken up one morning and was blind in one eye. After seeing an eye specialist, I was diagnosed with optic neuritis and was told it would take a year to recover. Over the period of year, I lost eyesight in both eyes about three to four times and this led to my diagnosis of MS. MS wasn’t new to me. It was a condition I had watched my mother live with for many years, and my mother was wheelchair-bound and my father her full-time carer. From being diagnosed with MS and been fortunate enough to have treatment and medication straightaway it has thankfully kept my symptoms at bay and they are very mild. I’m still able to work full time, and every year I raise money and awareness for various MS charities. MS for every one of us is completely different, we all react differently to all the different medication and all of our symptoms can be so different. We call it a snowflake disease because none of us are the same. I’m very lucky that my eyesight has fully recovered and I am currently relapse-free for four years due to the medication I am on.
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This week is MS Awareness Week, and we'll be sharing stories from people living with multiple sclerosis (MS). Every experience with MS differs for everyone, and each story shows how indivudal the journey can be. Declan shares his story and how he didn't let his sympoms stop him from following his dream to study law.
My name is Declan Groeger and I live in Cork, Ireland. I was diagnosed with RRMS in 1988, but I can trace the initial signs and symptoms to 1983. I had often yearned to study Law and in 1999 I decided to do something about it. I applied for, and was accepted, onto an evening course studying law at my local university – University College Cork. It seemed to be a daunting challenge which would involve three hours, three evenings a week for the initial two years and progress to three hours, four evening a week for the next two years. All this, plus tutorials and study whilst holding down a full-time position as a real-estate agent.
I did 16 subjects over the initial four years which was the same number of subjects that full-time students studied over three years. Lectures and tutorials were at pre-ordained times – all after a day’s work, but study times were a different matter entirely. My boss allowed me a certain amount of freedom and I was able to manage some study time while in the office. My non-college evenings became study time, as did Saturday mornings but that was it. I still needed family time with my wife and two daughters.
My handwriting had deteriorated over the years to where it was barely legible as tiredness eclipsed my drive to be as good as I could be, and I knew that note-taking in lectures could be illegible without context. I bought a laptop, and my wife bought a voice recognition program. I would read my notes into the laptop, within 24 hours, while everything was fresh in my mind.
After I had completed my four-year stint and achieved my Bachelor of Common Law (BCL) with a 2:1, I discovered that I was addicted and enrolled for a further two years for a post-grad and achieved Bachelor of Laws (LLB) and by that time in 2005 I had got the further education bug out of my system.
I retired in 2010, 22 years after my diagnosis due to fatigue. It was a good decision for me as my quality of life has improved. I have undertaken a number of online courses over the years to keep my brain as active as possible and I like to think that I doing alright, particularly in these strange Covid-19 times.
For MS Awareness week, MS-UK Counsellor Louise Willis explains that changing your internal monologue can make the world of difference
Have you ever caught yourself thinking or even saying, ‘The kids never shut up’, ‘No one cares’, ‘I am a total failure’, ‘I can’t do anything right’? If so, you are not alone. All of us have negative thoughts from time to time, they are a normal part of being human.
It can be easy to think or say ‘hey, cheer up!’ or ‘things will get better’, but are these words of encouragement really what someone who is struggling with negative thoughts needs to hear?
During our relatively short evolution, our brains are wired to focus on things that can go wrong, things that can cause us harm or pain. And this makes a great deal of sense and is what we call a negativity bias.
In our early days as a species, this wiring was crucial to survival. Imagine our ancestors sitting around a camp fire and hearing a predator approaching, whilst not being alert to the danger. This is not a good approach for our survival!
Stuck in the past
Due to our rapid evolution, our environment and the way that we carry out our daily lives has changed incredibly, but the primitive wiring of that particular part of our brain is somewhat stuck in the past. We can easily become stuck in a spiral of negative thoughts and beliefs.
There is an area of the brain located in the brain stem called the reticular activating system (RAS) which acts as a kind of funnel. It takes information from the outside world and focuses our attention. An example would be – you get a new blue car and all you see are new blue cars. This is the same process in what we choose to focus on in terms of experience, thought and emotion.
The good news is that, with practice we can change the RAS to filter in the good stuff. By seeing what we put into our brains as ‘food’, we essentially have the choice whether to nourish our brain and ultimately our mental health, or carry on in those same negative patterns. Over time the practice of focusing actually changes the neural pathways in the brain. This is called neuroplasticity.
Sometimes we can fall into negative thinking patterns that become automatic or knee-jerk reactions. Dropping something can instantly result in thinking ‘I’m so clumsy’ or missing a deadline can elicit a harsh talking to from ourselves.
Talk kindly to yourself
Trying to imagine how we would speak to a loved one can be helpful as we can often speak to others with more kindness than we do to ourselves. Making an effort to talk to ourselves with kindness and compassion can show us on a very deep level that we are worthy of respect, it is also a good model for those around us. We can think of the process as a computer program that would benefit from being re-written.
Negative thoughts not only affect our feelings but also our somatic or ‘felt’ experience. This is our bodily sensation of a thought or feeling. Identifying this ‘felt’ experience of particular negative thoughts can be incredibly helpful. Noting where in the body the thought is experienced, giving it a colour, a form and description can be very beneficial.
I have given some ideas for ways of challenging and changing negative thoughts. Choose what works for you and remember to practise regularly!
If you found this blog helpful, please consider donating to our crowdfunding appeal to help us offer video counselling for people with MS. Donte here
MS-UK is using MS Awareness Week to tell people the impact multiple sclerosis (MS) can have on mental health by sharing videos and blogs from its counselling service.
We offer the only dedicated telephone counselling service for people with MS in the UK and are currently crowdfunding to pilot a scheme of video counselling, which the MS community has told us would be even more beneficial.
During MS Awareness Week, which runs from 20-26 April, MS-UK will be posting vlogs from our trained counsellors on our YouTube channel and social media. They will cover topics such as how to deal with negative thoughts, low mood and anxiety, and managing uncertainty when living with a condition like MS.
We are encouraging everyone to get involved by sharing the content on social media and using the hashtags #MSAW2020 and #MindOverMS
On person who benefitted from MS-UK’s counselling service is Vicki who, eight months after her diagnosis, was struggling to cope. “I had so much pent-up anger and didn’t know what the future held,” she explains. “Counselling from MS-UK really helped me to communicate how I was feeling. It was very beneficial, but I think doing it via video would be even better, because you can see the other person’s body language and have a better connection with them.”
“Last year, 93 per cent of the people our counsellors worked with improved or maintained their mental and emotional health,” says Amy Woolf, CEO of MS-UK.
“NHS waiting lists for counselling can be up to 18 months, whereas we aim to keep this below 12 weeks. There are 90,000 people with MS in real financial hardship so it’s vital we raise funds to keep our services free or donation-based.”
We need your help!
We need your help! You can contribute to the crowdfunding campaign here and watch more of Vicky’s story – even if you can’t contribute financially, please share it on social media to help us get this vital service up and running to help people with MS live happier, healthier lives.
'Before I was diagnosed with multiple sclerosis (MS), I was very keen on sport and was always very active participating in sports teams, such as when I joined Colchester Ladies Hockey Club and later on, a Colchester badminton team. I also started playing golf in my mid-thirties and was a very active gardener as I got older.
'However, pre-diagnosis, I had an unexplained ‘attack’ which left me very fatigued with a tendency to quickly hit a ‘fatigue wall’ during any physical exercise, even just walking to the shop. This meant that my very active lifestyle came to something of an abrupt end, even though my mind still thought of myself as fit and active. Suddenly, I just couldn’t do the things that I used to do. Despite my mind telling my legs to run, jump or whatever, my muscles just weren’t able to comply. The messages from my brain just weren’t getting through. It was a very scary time and I began to get scared of trying to carry on doing any physical activity.
'I remember one time when I was still just able to trot a bit and I was walking across a field to our campervan, and it began to rain. I started to ‘run’ towards the van for shelter and took a big tumble which twisted my ankle, wrenched my back and gave me big bruises and muddy clothes. Luckily, I’d fallen on grass but as I’d not fallen over since I was a toddler according to my Mum, it gave me a big shock! This episode really dented my confidence and my physical activity reduced considerably after that.
'Once I received my MS diagnosis, I was overwhelmed by so many fears, worries and confusion. I found it difficult to take in and understand all the advice and information I was given. I didn’t ask about physical exercise or about many other things related to MS because I didn’t know enough to know what to ask, my mind was in a spin. All I remember was being told that ‘overdoing it’ could bring on a relapse, and to rest and pace myself or I would ‘pay for it’. This made me very worried about doing any physical exercise in case it brought on a relapse.
'After my diagnosis, I now exercise twice a week at MS-UK’s wellness centre Josephs Court on a Therabike and on the Vibeplate. I joined Josephs Court two years ago and have been aiming to strengthen my arm and leg muscles to help compensate for my severe fatigue and to reduce the risk of falls. I’m really pleased with my progress and I’m now able to do a lot more than I was able to do before I hit my ‘fatigue wall’. I’ve also learned how to pace myself better through the excellent coaching at Josephs Court and the MS-UK Mindfulness training.
'I now appreciate doing the exercise as it enables me to garden regularly, as long as I’m strict with my pacing! Now I have four grandchildren under the age of four and another on the way, and I have begun to feel that I would be missing out on enjoying family time together, but my increasing fitness and activity has meant that while I still find it very tiring to play with the three year olds, alongside looking after the one year old twins, I’ve been able to find ways to cope with them all and enjoy them without exhausting myself.
'I also have advice to those who are affected by MS and are nervous about exercising. I would say that I feel that good information is the key to living positively with MS. When I was first diagnosed 13 years ago, I didn’t ask questions. I was in denial for about 10 years before I finally plucked up the courage to go to Josephs Court. By then my fitness and strength had deteriorated massively impacting negatively on my general health and wellbeing, so I wish I had been able to ask the questions I needed to earlier in my diagnosis. I have found in the last two years that mental and physical wellbeing, with keeping yourself as fit and healthy as possible, are so important if you’re living with MS, or a similar chronic condition. When I started exercising at Josephs Court, I hit my fatigue wall almost immediately but with the help and encouragement of my Wellness Coach, Jay, I was able to slowly improve.
'Another benefit that I found with exercising is the social part of it. I loved meeting other clients, something I was very nervous about to start with. But chatting with other clients, comparing notes and encouraging others has been a lovely but unexpected bonus, and has really helped me look much more positively on myself with MS. Also, joining the social group and attending social events such as the regular coffee mornings, has been a very enjoyable revelation for me, and helps me to think so much more positively about MS.
'Finally, I find the exercising therapeutic, I feel really well after an exercise session – I am more relaxed and subsequently sleep better; and by the next morning my back and leg pain and spasticity are very much reduced. It improves my strength and stamina and increases my sense of wellbeing. Now, I can also enjoy time with my family and friends without constantly feeling exhausted. “I don’t feel ‘ill’ anymore!"'
'I was diagnosed with MS in the summer of 2007 and I quickly tried to find out more about it and what I could do. Of the various organisations offering advice, it was MS-UK (or MSRC as it was at the time) that I found most helpful and supportive. The pragmatic and un-blinkered information, the positive attitude of taking control of your own situation helped me through those first difficult few months, and that idea of taking control of your own health is still very much with me.
'Fortunately I then got the chance to join the Board of Trustees at MS-UK and it gave me a chance to use the skills I had developed in my management consulting career for an organisation that really was making a difference to people’s lives.
'Before I was diagnosed I was very physically active, despite a demanding job that took me to many places around the world. The mountains and mountaineering was my real passion, and as well as rock and ice climbing I ran and cycled. Ironically it was a friend seeing me stagger back from a day’s rock climbing that made me go to the doctor and started the process that led to my diagnosis.
'I have primary progressive MS and immediately after diagnosis my physical symptoms were pretty minor. But as my mobility worsened I couldn’t climb anymore, I kept falling over when running because of my foot drop, and tunnel vision when tired made road cycling too dangerous. Climbing was a big part of my life and not being able to do this felt like a huge loss to me.
'So now 12 years after diagnosis with PPMS I do what I can when it comes to exercise and it’s still a big part of my life. I can’t run at all or walk far, so I have a rowing machine for cardiovascular exercise. I used to have a rowing club nearby that offered assisted rowing which was wonderful. I have a home gym where I can do resistance and strength work and have joined The MS Gym.
'I have seen the benefits of exercising personally and am certain it has allowed me to recover some lost ability. For a while my foot drop was pretty bad - all my right shoes had the familiar tell-tale scuff marks around the toe. But amazingly I found that by working on my right foot and leg I managed to nearly get rid of the foot drop – so now it’s only when I’m really tired that I have a problem. This helped convince me that although I might not be able to recover all the function I’ve lost, I may be able recover some function and must do what I can to maximise what I have.
'I also have some advice to people affected by MS who are nervous about exercising. Exercise will not make your MS worse. Even if you feel exhausted or can’t even move immediately after exercising, you will recover. And it is fine to exercise to ‘failure’ and push your limits – just make sure you’re safe, be aware of form, and have time to recover. There are lots of stories from those with MS that have some functional recovery by exercising, including at basic levels of movement. Also brain loss as we age is much faster in those with MS and exercise slows this loss. However, it can be hard, especially with the fatigue and mobility issues. There is lots of help out there to start you on your exercising journey. Neuro physiotherapists can be incredibly helpful and your MS nurse or consultant might be able to refer you. Many gyms offer advice and training programmes, and there are assisted activities all over the UK. MS-UK and the MS Trust have general advice and more details on exercise programs.
'I also found that exercising with MS requires a huge amount of concentration and can be very tiring. It’s not just a case of “use it or lose it” because form is really important. When I exercise I’m also trying to create new neural pathways to overcome functional loss, so learning and practicing the right way to move is vital.
'Finally, I feel that exercising is therapeutic and I know that I have recovered some lost function through exercising. I’m convinced that if I didn’t exercise, I would have lost more function and exercise has helped me alter the trajectory of the condition. But I just enjoy doing it and feel so much better - even if I can’t move a step immediately afterwards!'
I have been living with multiple sclerosis (MS) for thirty-five years. In 2014 I noticed that walking was becoming more difficult and my MS nurse recommended that I contacted Josephs Court, MS-UK’s wellness centre in Colchester, Essex. I attended twice a week to exercise and became a founding member of their Steering Group. Before I was diagnosed with MS, I exercised every weekday walking for 10-15 minutes to the office where I worked in London. At lunchtime I would occasionally go for a 30 minute walk if the weather was kind, and this felt like it was a sufficient form of exercise. However I was unfortunately diagnosed with MS, but nevertheless I continued exercising in the same way for another 13 years until I eventually changed jobs in 1996. By then I commuted to Basildon by car – therefore my exercise regime came to an end.
But now, I visit Josephs Court two mornings a week, for 2-3 hours each time, and use most of the equipment available. I’ve also increased my exercise since the arrival of the latest university students, as one of them has given me some rigorous exercises using the parallel bars.
Now I feel that doing gentle exercise gives me a feeling of “getting one over on my MS” – it isn’t going to stop me from doing something that I enjoy, and there is a social aspect too. We are all suffering with the same disease label yet we don’t talk about it, we just enjoy one another’s company. The social aspect means I now have someone else to talk to, and shows that I needed something to relieve the boredom of not working, as I spent three years applying for jobs with no luck.
Finally, I thoroughly enjoying working with the student physiotherapist Becca, as she has brought new ways of exercising to me. I also find volunteering for MS-UK therapeutic – it is another reason for existing and gives me purpose.
'In 2016, I was diagnosed with progressive multiple sclerosis (MS) and decided to find out more about MS-UK’s wellness centre, Josephs Court, especially when it really began to affect my balance. I visited weekly and have found the welcoming atmosphere really helpful to me, especially with things such as discussing treatments, and getting ideas and tips for coping.
'Before my diagnosis, I played table tennis to county level as an under 17 and took qualifications to become a swimming teacher. In my youth, I even became a lifeguard with the Guildford Lifeguards. Many years later I joined a gym with my middle daughter Naomi, and we used to go several times a week.
'Alongside this, we also used to cycle to the school I was teaching in and where Naomi was also a teaching assistant. It really was downhill all the way to school, but uphill all the way back. Naomi was able to cycle all the way home, but I had to walk and push my bike for some of the way. Then in 2007, I moved to Great Totham so cycling to work was no longer an option, just an 80 mile round trip to school and back.
'After diagnosis however, my exercise regime was affected, and I didn’t think that exercise would work for me as it used to. My balance was going and I could no longer ride my bike as a result. I even tried stabilisers, but I continued falling off. Subsequently, I started going to Josephs Court and at first, I couldn’t really see the point of it. I could still walk even though my balance was shaky. However, I kept going and then soon realised just how much I needed what Josephs Court could offer and help me with.
'Following this, I ordered an adult tricycle, and was amazed when I was able to get on and ride it straight away, albeit not very far to begin with. But now two and a half years later, I’m able to ride 4.5 miles most days around my home village of Roxwell. I sometimes book myself in for a six week course of hydrotherapy. I think the feeling of being able to walk across the pool with no sticks or rollator is amazing.
'Because of what services there are for those diagnosed with MS, I can’t value exercise highly enough. I have always been competitive, so Josephs Court and tricycling gave me this challenge.'
Next week will mark MS Awareness Week 2019. This year we’re very excited to be working alongside the MS Trust and the National MS Therapy Centres to raise awareness of the benefits of exercise.
We have developed a free booklet all about exercise which includes some seated exercises to help you get started. We hope you find this useful and it includes first-hand quotes from other people who have been in your position - people who can truly understand and empathise with your feelings about exercise.
The MS-UK Helpline team